Luckily not all Pompe patients have to use G-tube feeding, but for those who have this information might be interesting.

I received a PEG at June 1998 as my bodyweigtht decreased rapidly. The surgery went fine, but after surgery I experienced a lot of nerve pain around the PEG.

My respiratory care nurse consulted an ENT physician to check if he had any experience with similar pain experiences of patients with a tracheostomy. He recommended me to use an ear ointment that numbs the nerve pain and reduces the wild tissue that also can cause this pain. I received a prescription from my respiratory care specialist and applied the ear ointment on the skin around my G-tube. Since then I never experienced any pain around my G-tube/PEG anymore. The wild tissue too was eliminated.

I share this information with you as I notice that some people with G-tubes (among them cancer and neuromuscular disease patients) do experience quite some pain. This ear ointment may be helpful in solving this problem. It is only available on prescripion.